Monday, November 23, 2009

It's definitely tomorrow

The consent forms are signed, and I've spoken with representatives for the surgeon and a member of the anesthesiology team. Tomorrow at 7 a.m., Magnus will have his surgery.

Today it's starting to become more evident that Magnus really needs this surgery. His heart function is starting to decline, as expected, and his O2 sats are much lower today. They're now in the range of what they expected for him, but it's still scary to see the monitors beeping because his oxygen is too low. Once it went so low that they put an oxygen mask over his face for a few seconds. Nobody there seems worried, and at this point he doesn't have too much longer to go before his surgery anyway, but one of the neonatologists told me this afternoon that they might put him on some additional medications today to help his heart-lung function.

I am taking a brief break at home right now, but Iggy and I are really trying to squeeze in as much quality time with our little guy as possible today, because he's going to be completely sedated for at least the next couple of days.

The nurse practitioner who works with Dr. Azakie talked to me for a long time about exactly what will happen and what the possible complications are, which was very helpful.

The plan is that he's going to stay in the intensive care nursery where he is right now until sometime between 6 and 7 a.m. tomorrow, when the anesthesiologists will come to get him. We'll have to say goodbye to him then, and then they'll sedate him, put in a breathing tube and some other lines, and start the surgery. The procedure itself is estimated to take between 4 and 6 hours, but they told us that the earliest he would be in the pediatric cardiac unit was around 1 p.m.

She told me that they are usually able to close the chest after the surgery, but some babies get so swollen that they have to put this off for a day or two (or more, as I know from reading blogs about other people's experiences). A day after the chest is closed, the next step is the removal of his breathing tube. In some cases, the nerve leading to the diaphragm can be paralyzed during the surgery, and if this happens, he would have to undergo another, much more minor, surgery to fix his diaphragm before the tube could come out. However, she told me that this happens in "less than 10% of cases."

After this happens, he can start to be weaned off his sedatives, and will get an NG tube, and can start to actually take in breastmilk, which is exciting! And within days of that they will try to see if he'll take a bottle. Another complication that can arise from the surgery, though, is that the nerve leading to the vocal chords can be damaged, leading to vocal chord paralysis. This would lead to temporarily losing his voice, which is not such a big deal, but can also cause feeding problems. There is no treatment for the vocal chord just resolves on its own in 4-6 weeks.

Another thing that then has to happen is the removal of tubes that will be draining fluid from his lungs.

She told me that the shortest time anyone has ever been in the hospital after a Norwood at UCSF was 10 days, and that that has happened once or twice. The majority of babies are in there for 14-21 days after surgery. We've been hoping he'd be home by Christmas, and if all goes according to plan, it looks like that will happen.


  1. I'm sure it goes without saying, but I will be thinking of all three of you nonstop tomorrow. Such a strong, beautiful little guy. I hope everything goes perfectly and that you and Iggy hold up okay through it all.

  2. I'll be thinking of you, too. I love you guys, and I'm here if you need anything at all.

  3. It would be nice if you could take a sleeping pill or something to get you through those hours of waiting tomorrow. That baby of yours has done better than expected every time he is tested. Tomorrow will be no different. All I can say is try to keep busy. I wish I could be there to distract you. We send love and wish we could move the clock forward 24 hours.

  4. Dan, Finn and I will be thinking of you guys to you, Iggy and sweet little Magnus!

  5. We will be thinking of all three of you tomorrow! I know that Magnus is going to perform like a champ. When you're in the waiting room, I'm sure that it's not much comfort, but know that the three of you have the loudest and most positive network of cheerleaders that anyone could ask for. All of our love will be right there with you tomorrow.

  6. Wishing you all the best for tomorrow.

  7. I have every belief that Magnus will show those surgeons how awesome he is. Lots of love to all of you!

  8. You guys, I'm thinking about you guys and your gorgeous, tough little boy and will keep hoping all day. Please keep us up to date.

  9. Good luck to all of you!!!

    using 3 exclamation marks to make sure


  10. I wish the three of you all the best for tomorrow, send along all my love and will keep you in my constant thoughts. Let us know when you can how you all are doing.